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Previously, we gave an overview on POTS and the diagnosis of POTS. Now, we want to answer the question - How are POTS and orthostatic intolerance treated?
Although there are many strategies that can be utilized to help patients with POTS and orthostatic intolerance, I would like to highlight the one that confers the most benefit but is also the treatment typically not stressed enough. Perhaps this is because it is not easy to implement.
I am referring to EXERCISE! Think of this as the medication that you cannot live without. For patients with autonomic dysfunction, exercise is crucial to re-establish and to maintain proper ANS function. Exercise should include about 45 minutes aerobic activity at least 5 days/week, as well as at least 2 days of resistance training focused on the core and lower extremities. The aerobic portion should include a 5-minute warm up and cool down, with moderate to high intensity exertion in between. Exertion level is subjective and should not be gauged by heart rate monitoring. It is not recommended that patients wear any form of heart rate monitoring device (i.e., AppleWatch) because the heart rate is not reliable in autonomic dysfunction and only induces anxiety. If the patient has severe orthostatic intolerance, it is recommended to start with recumbent exercise such as recumbent bike, rowing, or swimming. The goal is ultimately to progress to upright exercise (elliptical, treadmill, etc.). It may take up to 3-6 months to work up to this, and the process is not easy. Although many patients with autonomic dysfunction symptoms report issues with exercise intolerance, most of these patients, with a lot reassurance, can complete an exercise stress test in the exercise lab. It turns that many patients avoid exercise due to the fear of getting symptoms and the fear that they may be harming themselves. For patients with HSD/hEDS, it is also important to work with your physical and occupational therapists to make sure you are protecting your joints with whichever exercise modality you choose.
There are other treatment modalities that can help with autonomic dysfunction, but none of them will work well long-term without exercise. Think of these treatments as a bridge to help you tolerate exercise better. To help more blood return to the heart, we recommend things like compression garments, adequate hydration, and plenty of salt. To help reduce spikes of adrenaline and other stress hormones, we recommend things like meditation, yoga, and deep breathing, as well as other cognitive behavioral techniques. Medications are usually not necessary, but for patients with disabling symptoms who are not getting better, there are several options that can be considered.
Living with POTS? See the video: https://newsnetwork.mayoclinic.org/discussion/living-with-pots/
Author: Daniel Dudenkov, MD
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Just curious, what do you recommend for those of us who have Post-COVID POTS but also have developed something along the lines of exercise induced hypertension?
Welcome @mcolton16
You may wish to take part in this discussion:
- Exercise-induced Hypertension https://connect.mayoclinic.org/discussion/exercise-induced-hypertension-systolic-230/
And the conversations in the post-COVID support group here:
- Post-COVID Recovery & COVID-19 https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
Did you develop POTS and hypertension only after having COVID?
@mcolton16, I took your question to Dr. Dudenkov, an internal medicine specialist at Mayo Clinic, who wrote the above blog post. He has this information for you.
"It is very common for patients with POTS (whether post-COVID or after any other trigger) to be hyperadrenergic. This means that they have high levels of circulating stress hormones, most commonly adrenaline, much higher than patients without POTS. Adrenaline is further increased when standing or exercising. Two of the most common effects of high adrenaline is elevated heart rate and elevated blood pressure. Thus, it is not uncommon for us to see exercise induced hypertension (in addition to tachycardia) in patients with POTS.
It is important to understand that this elevated blood pressure while exercising is not inherently harmful. The key is not to stop exercising. With appropriate reconditioning, the blood pressure should improve also. I do not recommend monitoring heart rate or blood pressure while exercising, because it can cause anxiety and you may be tempted to not exercise, further making the situation worse.
For patients who are very symptomatic from their tachycardia and elevated blood pressure, to the point that they cannot tolerate even minimal exercise, it is also worthwhile considering a medication such as propranolol, which essentially helps block the effects of adrenaline on the heart and blood vessels, thus reducing heart rate and blood pressure. There are a few other medications that could also be considered, and I recommend discussing this with the provider who is helping manage the POTS. The purpose of a medication would be to help you increase your exercise, with the ultimate goal of discontinuing the medication."
So the important takeaway message, is to go slow, but to keep exercising. What kind of exercise do you do, mcolten?
Hi I'm new to using Mayo Connect so I'm not sure how personal our questions can be. I was diagnosed with EDS and POTS and fibromyalgia. I've exercised my whole life and continue to 5-6 days/week. I walk, run (if I can avoid falling/tripping), or stair climb for 30-45 min/day and strength train 3-4x/week. I am very very fatigued after both cardio and weight training even though my goal is always progression. I am a physical therapist and focus on stability and joint protection throughout. I do not focus on my heart rate or blood pressure but most of the time feel intense pounding (chest and abdomen) and difficulty breathing (very winded) during even light exercise. I've vomited during cardio and weight training but always finish my session. I use to faint during exercise and am constantly fighting numbness and weakness throughout my body during exercise. The mental lift I get from exercise is motivating. I can feel some adrenalin. However, before and after exercise I feel like my body wants to shut down. I'm objectively very weak and winded all day. My eyes want to shut and I want to fall asleep. I rarely sit throughout the day only occasionally and limit time if I can. I can't help but notice how much moderate exercise negatively impacts my strength, breathing, alertness/ability to think, balance, etc. I also know that if I stopped exercising I wouldn't be as functional as I am. My question after all of this is: Is it common to feel like your body is shutting down for the rest of the day after exercise with these diagnoses? I get maybe 20 minutes of normal energy levels after exercise and then feel drained intellectually and physically for the rest of the day Also, before my diagnosis I was LOSING cardiovascular endurance and strength despite keeping the same routine. I never stopped, but no matter how hard I try, I keep losing function, endurance, and strength. Is that common in EDS and POTS patients who were athletes their whole lives?
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1 ReactionHi Colleen and thank you for your help in directing me to forum. I have mentioned under the Skin blog, that along with my Hypermobile Ehlers Danlos and Mast Cell Activation that I also have POTS (as this trifecta is a common occurrence) but not that I have a rarer subtype called Hyperadregenic POTS - essentially this translates my body overproduces levels of noradrenaline, which causes a more rapid heartbeat (a fight or flight like state) and wanted to share I recently learned this often can trigger a mast cell activation syndrome event. Often, and is the case with me, we tend to have low BP. Also, I do not experience hypotension as most other more common POTS patients do and also lose more salt/sweat - that I had no awareness of as thought I didn’t sweat much. I was recommended to up my salt and as I’m chronically dehydrated I now take flavored NUUN tablets (can get on Amazon) in watermelon as lemon/citrus, food coloring etc can trigger my histamine/mast cell response. I found these worked best for me over other salt tabs and learned of this through my EDS community. I hope this helps someone. I was told to take the Prop…drug you mentioned; a beta blocker than cause weight gain and as someone who is less active and struggles with weight management avoided. I subsequently learned that having Hyperadgrenic POTS can actually trigger my MCAS and so I now get the importance of taking the medication - as I’m drug avoidant and figured I’ve gotten through this long but infact will do better overall. I had hoped to go on mitridine (sp) that I hear on a forum causes less MCAS triggers but later heard my subtype responds to the beta blockers. Wondering, would you be able to shed some light on whether the Mayo Clinic recommends mitridin/mitridine for Hyperadgrenic and if not what alternative beta blockers or even natural remedies e.g. hormone reducing foods, CBD supplements or combinations may or may not be recommended? Because I didn’t start the drug, I now have to resume my care and have a four month wait to be seen. I’m just beginning to learn about POTS and MCAS as these diagnosis came much later. Lastly, I’ll share in case others experience this…I have internal tremors on occasion and learned was linked to this in case anyone has also shared that experienced - but of course may be other causes worth persuing with their PCPs along with this. Thanks! hEDStrong
@spoeps and @mcolton16, there are several blog posts related to EDS and exercise that you may wish to check out:
- Exercise for hEDS and HSD https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/exercise-for-heds-and-hsd/
- Pilates Exercise and EDS https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/pilates-exercise-and-eds/
- Yoga for Well-Being in hEDS/HSD https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/yoga-for-well-being-in-hedshsd/
Hi! I am looking for advice on where to start in finding out if my almost 18 year old daughter has the trifecta EDS, POTS, and MCAS. We have been trying to figure out what’s going on with her through her allergist and family doctor. We live in northern Michigan and don’t have easy access to a lot of specialists. We are willing to travel to nearby states. I just don’t know where to even start in getting her diagnosed. Any help would be appreciated.
@cutlertc, if you would like to seek a second opinion from Mayo Clinic, click this link to get started: http://mayocl.in/1mtmR63
Mayo Clinic in Rochester, MN may be an option for you.
Curious I have recently received a POTs diagnosis along with long COVID and other dysautonomia. I am working on getting into physical therapy, but until then what is recommended for the 45 min of aerobic activity 5 days a week? I am trying to do weight resistance exercises (ie squats and lunges with weights) and I have worked up to 7 minutes of rowing. The information my doctor gave me indicated to work up slowly from 3 minutes on the rower and I have been. Overall, my exercises take me about an hour in total but mostly because I am still slow in the weight resistance. Are there resources on an exercise program for POTs? I would like something with more structure while I wait to get in with PT so I feel like I am working the best I can with my body towards getting better. Thank you!
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2 Reactions@ashesmo58, it sounds like you are doing well with listening to your body and working at a pace that is right for you.
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